In 2003 we decided it was time to find out why the "Terrible Twos" came on at 12 months and still hadn't left at age 3. He was starting to have extreme behaviors and could almost never sit still. He was chewing on things, despite being way too old to teethe. Most of his board books were devoured. He was jumping and jumping and jumping where ever he was. Even one time his jumping landed him at the ER with a goose-egg on his head and a nice scar when he slipped and hit his head on the way down.
The developmental pediatrician we saw also did not pick up on his diagnosis. She felt that, if anything, he was showing signs of giftedness and perhaps ADHD. But she was loathe at the time to diagnosis him with anything. However, she sent us to a family therapist, who picked up on his Sensory difficulties.
From there, we started Occupational Therapy and soon after Physical Therapy. It was at that office, I was introduced into the world of Autism Spectrum Disorders.
I began to see the similarities in the other children in the waiting room. While many of these children were not verbal, the behaviors were so familiar. One day, our son had such an explosive episode another Mom said to me, "Asperger's Syndrome"? And I said in a pleading voice, "I don't know".
That day, I got online and went to town on my research. Suddenly I had found it. Asperger's Syndrome. THAT was exactly our kid. I called up the Developmental Pediatrician who squeezed us in for a full Psychological Evaluation. We walked out with the diagnosis.
By this time, Preschool was well aware that we were trying to find answers. He, of course, was having behavioral issues there. But the teachers were really patient and understanding since they knew we were doing all we could. We were in the process of getting him some one on one supports when a new parent threatened to pull funds from the program if our son was allowed to continue there. I received a call that day from the teacher who was mortified. Her boss (an administrator who had never even met us) told her to call us and tell us we couldn't come back. I was sick.
We found another preschool, which was very accepting and accommodating. By this time, our local education system was getting him into an early intervention program. He continued in private preschool for three half days per week. He attended Early Intervention 2 days per week for a couple hours at a time. It was all going pretty well.
Enter the local school district.
In the Spring of 2004, we had a formal meeting to transition our son from Early Intervention to School Aged. At the time, we thought this was going to be our IEP meeting. Upon arrival, we were told that it was not an IEP meeting - but a transition meeting. We were given papers to sign him out of Early Intervention and a paper which stated our intention to enroll him in the district Kindergarten program. Assuming this was the process, we signed papers and went on our merry way.
In the summer of 2004, our local district offered us a summer school program that would allow him to become familiar with the Kindergarten rooms and school in general. We jumped at that chance knowing that familiarity was good. We couldn't have been more wrong. It was a horrendous disaster. The program was called "Success by Six" but it was really "Weed out by Six". The program was a sly way for administration to figure out which kids were going to be "problems". The goal was to break the wild ponies before fall. The summer teacher, who was a regular kindergarten teacher, was not allowing our son any accommodations. There was no tolerance for his quirks.
With the problems ensuing, I contacted the school district to find out about an IEP meeting. The district administrator told me that we didn't need any meetings - his Early Intervention IEP would carry through and we should "wait and see". BUT...she slipped and said he was not getting Physical Therapy. I hung up the phone and it dawned on me. I was very green on educational law. But I knew that they couldn't change the IEP without a meeting - which is what she insinuated had happened by removing PT.
I contacted our state's educational consult line first to find out if I was right. What I found out was MUCH more than I had expected. You see, that meeting where he was removed from Early Intervention was also supposed to be an IEP meeting for his school aged IEP. The school just ignored that and thus took him out of special education with no intention of ever telling us. I supposed they figured we'd be "none the wiser".
Talk about feeling bamboozled. BUT, we thought, okay...maybe they are just really screwed up and didn't KNOW what to do. We took the high road.
I formally called an IEP meeting in writing. Two weeks before the start of school, and IEP document was written. I was still fairly green, but had done enough research to make sure that we wrote something based on needs. Since there were no school evaluations done, I provided outside psychological reports, OT reports, you name it, I included it. I found a really nice document outline to give teachers about your child and customized it. I emailed and mailed copies to the team members in advance and had copies to give everyone at the meeting. The documents were never even so much as opened or glanced at.
Despite this, we walked out feeling pretty ok with things. Everyone seemed so nice. They assured us things would be great. Talk about being naive.
By the second week of school, the principal sent our son home for "behaviors". By the third week, he was threatening to expel our 5 year old. By week four, I was being told they were going to change his placement. I hired an advocate.
We found out that his IEP was not being followed because it was not a legal IEP. Our son never had a school evaluation to show a need so therefore, it was just a dummy document to shut us up. There was a plot to transfer our son out of the Autistic Support and into a emotionally disturbed classroom which was just full of problems.
Our Autism therapist (who works at a notorious Autism clinic) received a call from the school psychologist who attempted to persuade her into turning against us. The therapist questioned the school psych as to why they felt he wasn't on the spectrum. The school psychologist started rattling off behaviors that our Therapist advised were indeed indicative and quite common for Asperger's. The school psych, unhappy with that answer, said "We don't see it that way" and hung up on her. I was told this first hand by our therapist.
In the meantime, our son's anxiety was off the charts and he was becoming dark and withdrawn. He started talking about wanting to die. Finally, we had to have him admitted for his own safety.
We called the school to the plate. Do a Multidisciplinary evaluation and get this kid some supports. The school complied, although missed time lines. But in the meantime, his current teacher was really taking the high road and working with us, despite her administration. We also had a private one on one who made the rest of that year tolerable.
Summer was somewhat non eventful until two weeks before school start. We received a call that his one on one was taken off our case. The explanation was given that she wanted off. In the meantime, she and I had become close. I called her and she had no idea that they pulled her off the case. She put in a call and was told she'd lose her job if she pursued it. We soon figured out the school had "gotten" to our one on one's agency. He started first grade alone.
Within a few weeks, we found a new one on one via a new agency. It was going "okay" as far as we knew. By December, we had a different story. He came home with bruises from an Aide assisted by the Principal. We soon found out he had been put in seclusion and restrained while there in a very illegal prone restraint almost every day that year.
We pulled him out immediately, filed due process and enrolled him in Cyber School. He's been in Cyber for two years now and just flourishing. But in March of 2007 he had to do another inpatient stay due to depression.
It's been a ridiculous saga to get our child an education. But we've finally found a home with our Cyber Charter School. I've since learned what special education "should" look like. His school granted him extended year services this summer and sent him to an 8 week day camp to work on social skills. He made friends there. We are so thrilled.
That pretty much summarizes our story, leaving out a lot of gory details. I hope you take away something from it. Amy C.
2 comments:
Angry parents say the Lee’s Summit School District leaves its utistic students behind
http://www.pitch.com/2008-07-10/news/angry-parents-say-the-lee-s-summit-school-district-leaves-its-autistic-students-behind/
Sam Lindsey didn't have therapy that morning, so the day began more leisurely than usual. The 3-year-old was up with his mother, Joyce Lindsey. By 7 a.m. he'd bathed, had breakfast and watched videos. Interactive time was especially important since he'd been diagnosed with the learning disorder apraxia; on this day, they used a Finding Nemo children's book about the little blue fish's day at school.
It was late September 2006. Sam had been going to his Lee's Summit preschool program for a month. He hadn't yet been diagnosed with autism, though he would be one year later. Lindsey had hoped that the school would place him in a regular classroom. Instead, administrators assigned him to a small class with two other students, both diagnosed as autistic. He'd been regressing ever since. She wasn't happy but had agreed to the placement on a trial basis, figuring that school officials needed an opportunity to see how Sam would do in the setting. She was worried. At the start of the school year, Sam had been able to use five words: no, cookie, more, please and yes. Within two weeks, those words had begun to drop away, and now he spoke in shortened approximations. When Lindsey held up a cookie, hoping to coax him to ask for it, the best he could do was cough out a chu sound.
"I thought they would come around and see that this wasn't working," Lindsey recalls. "At that point I still thought the school was on my side, that they just needed to try a few things and find what was best."
At 12:30, she told him it was time for school. Sam's class ran from 1 to 4 p.m. Normally he was happy for any reason to take a car ride. Today he refused to move.
"Come on, what's the problem?" she asked, getting an arm under him and dragging him to the car. In response, he started a high-pitched squeal, "Eeeee! Eeeee!" He screamed all the way to school.
When they arrived, Sam was quieter but still sullen. Because parents are not allowed to walk their children to the classroom, they waited near a play area. When a class aide came for him, Sam clung to Lindsey and began yelling again, burrowing his head just below her chest.
Confused about his behavior, Lindsey pushed him toward the aide. The aide grabbed him and tried to calm him, but Sam raised his arms above his head and flung himself from side to side like a wet noodle, shimmying out of her grasp, his blue Finding Nemo backpack bouncing against him. He ran back toward Lindsey, but the aide got him again. This time she held on. Sam screamed, "Eeeee!" all the way to the classroom.
Lindsey kept him in the school until April 2007. In the fall, Sam's diagnosis was changed from apraxia to autism. He lost the use of more sounds until he was virtually mute.
Now, not much more than a year later, she claims that the Lee's Summit School District denied Sam the services it should have provided and ignored his severe regression.
She's not the first parent to seek legal action against Lee's Summit School District for its treatment of autistic students.
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Missouri school officials consider the Lee's Summit district to be among the state's best for autism education.
At the fore of its program is Jerry Keimig, the district's 55-year-old director of special education. He's had the job for eight years. Before that, he spent six years employed at a Kansas psychiatric hospital and nine as director of special services for the Grandview School District.
The number of autistic children in Keimig's district is small but growing.
Stacy Martin, who was appointed the district's first autism education specialist in the early 1990s, says that when she started at Lee's Summit 32 years ago as a special-education teacher, only a few students qualified as autistic.
Today, out of the 17,000 students who attend Lee's Summit's 17 elementary schools, three middle schools and five high schools, 98 kids meet the educational definition of autism ("A developmental disability which may occur concurrently with other disabilities ... behaviorally defined to include disturbances in four areas: developmental rates or sequences; responses to sensory stimuli; speech, language cognitive capacities, nonverbal communication; and capacities to relate to people, events, objects, and which adversely affect educational performance," according to the Missouri Autism Resource Guide by the Department of Elementary and Secondary Education and the Missouri Department of Mental Health). More than 250 other students fall somewhere on the autism spectrum, with a variety of psychological conditions characterized by abnormal social interaction or communication.
The district doesn't have specific classes for children with autism because the symptoms differ from one student to the next. General special-education classes range from groups of 10 students to a one-on-one, teacher-student setting, though many special-needs students are in regular classrooms.
"As a subpopulation, autism is growing pretty fast. I hear all the time from parents who move here because of our special-education programs," Keimig tells The Pitch. "I think you'd certainly find people who believe it's not all it's cracked up to be, but lots of people here are very, very pleased."
Keimig has a laugh that comes suddenly and loudly, like a burst of machine-gun fire. His detractors tend to compare him to a used-car salesman.
His supporters want him to teach all Missouri administrators how to deal with their autistic students.
As proof of his program's success, Keimig cites two examples: special-ed students' high test scores on the Missouri Assessment Program (MAP) test, administered by the Missouri Department of Elementary and Secondary Education, and the district's program for training teachers on how to educate special-needs students.
The district's special-needs students performed well on reading comprehension exams in the last round of MAP tests in August 2007. Overall, however, their scores fell far short of the "Adequate Yearly Progress" goals set by the No Child Left Behind Act. (The same was true for students for whom English was a second language.) As a result, the entire district was given a failing grade.
District Superintendent David McGehee made sure that parents knew which students were at fault. "The scores of students in these two subgroups are the sole reason our district was designated in this category," he wrote in an August 17, 2007, letter to district parents.
Keimig touts Lee's Summit's teacher training program: two four-day sessions a year to refresh teachers on recognizing autistic behaviors and dealing with autistic students. But these sessions aren't mandatory, and there are no special incentives for teachers to attend. Of the district's 1,264 teachers, fewer than 80 attended the most recent sessions; half of those who did, Stacy Martin says, came from schools outside the Lee's Summit district.
But, Martin adds, teachers from neighboring states and school districts often pay $1,400 per person to attend the Lee's Summit training sessions. And Lee's Summit is so well-respected within the Missouri education system that Heidi Atkins Lieberman, commissioner of special education for the state's Department of Elementary and Secondary Education, has invited Keimig to speak at a conference of state administrators in August. He's scheduled to present a special session for superintendents on effective teaching methods for autistic students.
The Missouri Department of Education does not keep records detailing the progress of autistic students. Instead, it tracks the performance of special-education students as a whole.
In choosing Keimig to lead the special session in August, Lieberman says, she relied on informed friends. "I asked people who were very knowledgeable about autism education, and they all said Jerry would be great," Lieberman says. "I don't think I'm really at liberty to identify anyone I talked to."
The announcement of Keimig's special session infuriated some members of the Lee's Summit Autism Support Group, a collection of parents that includes Joyce Lindsey.
"If he's going to be there, we are picketing that conference," Lindsey says. "There's no way that he should be in that position."
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In Missouri, if a parent decides that a school district isn't meeting its obligations, the parent has several options for complaining to the Department of Elementary and Secondary Education. The most common method is filing a "due process" lawsuit against the school, which is then moderated by hearing officers assigned by DESE. That's costly for parents of special-ed students, who are already spending extra money on therapies and doctors. And the lawsuits are almost impossible to win, says one Kansas City lawyer who has a history of dealing with such suits.
"I don't even want to take them anymore because it's so hard to get anywhere," Kim Westhusing says. "The challenge is, you have to determine whether the child is receiving what the state refers to as 'free and appropriate education.' And the standard, as written, is 'Did the child receive some educational benefits?' OK, now what does that mean? What an educational benefit is depends on who you talk to. A student could go through a whole year of school, only learns to tie his shoes, and they could say that's an educational benefit. You almost have to show that their program has harmed a child."
Last year, Regina Yaros filed for due process because she wanted to keep her son Josh, 10, at Woodland Elementary School. Administrators wanted to move him to a Life Skills program at a different school.
Yaros argued that keeping him at Woodland was better for him because of his social interaction with children he'd known since kindergarten. She also believed that he already had capabilities exceeding what he would learn in Life Skills, which focuses on basic day-to-day activities such as getting dressed, going to see a movie and buying groceries.
"At his first IEP [Individualized Education Program] meeting, his teachers said they wanted to move him. But his IEP shows he's actually making progress. So we didn't understand why you'd put him in a class where he won't learn the things he's proven he can learn now," Yaros says.
"They explained that academically, he was too far behind the other students to stay. But that doesn't seem to be a reason to put him in a Life Skills class where all he'll learn is how to shop and dress. I can teach him that myself right now. Maybe later, if he doesn't progress, I can see it, but he's in elementary school, so why give up on him now?"
Yaros claims that during his IEP meetings, administrators told her that one of the reasons they wanted to move him was because, under state guidelines, they could waive his MAP scores if he was listed as a Life Skills student.
Yaros won her due-process suit based on her argument that Josh's current school was the "least restrictive environment for education" — under the U.S. Individuals with Disabilities Education Act, a "least restrictive environment" means that a disabled student should have the greatest possible opportunity to be educated with his or her nondisabled peers. As part of Yaros' settlement, Josh was to stay in his school for the academic year.
The year is over, and his IEP evaluations have continued to show him progressing. But, Yaros says, his teachers are again saying he should be in a Life Skills class.
Yaros estimates that the last due process, which her family is still paying for, cost $13,000, not including the costs of a behaviorist to review Josh's case at $90 an hour and a special-education advocate who charges $50 an hour. Both are required to be at Josh's IEP evaluation meetings.
"We won because his school is capable of providing an appropriate education for him," Yaros says. "Why put him somewhere that'll do less for him?"
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If you have an advanced kid, this is the best place in the world to be," Sherri Tucker says of the Lee's Summit School District. "But if your kid isn't going to help win at football or get a high ACT score, if they're just special-ed kids, the feeling is, they don't deserve anything."
Tucker, whose 15-year-old son, Jake, attends Lee's Summit High School, narrowly lost a campaign for a seat on the Lee's Summit School Board in April.
Two years ago, Tucker founded the Lee's Summit Autism Support Group with another mother, Deb Shaumeyer. Both had moved to Lee's Summit for its reputedly impressive special-education services, and both had filed complaints over the district's handling of their autistic children.
Shaumeyer filed for due process, claiming that the district had refused to provide her son with required services. She eventually dropped her case, partly because the mounting legal fees had forced her to refinance her home but also because of her sense that she could not get a fair hearing.
DESE regulations for due process specify that a case be chaired by three hearing officers — one chosen by the school, one by the parent and one assigned by DESE. The regulations mandate that the hearing officers be chosen from a list of approximately 70 officers designated by DESE. Almost everyone on that list is a school administrator, a teacher or a lawyer retained by a Missouri school district.
Only two have backgrounds as advocates for special-needs children.
"When my hearing chair is a school district attorney, the school's representative is a school administrator, and the one I get is a parent advocate — and on the whole list, only two are parent advocates — what chance do I have?" Shaumeyer says. "The odds were stacked against me, and I was out of money, so we ended up settling."
According to Wanda Allen, a secretary with the DESE's Division of Special Education, the people listed as hearing officers are qualified people who apply to DESE for the position every 18 months. But it's been years since anyone new was considered for the positions. "Last year, we just updated the list of people we already had," Allen says.
The Division of Special Education does not track statistics comparing how many due-process complaints are filed against a particular school or district or the results of those complaints.
Keimig's name is on the list of hearing officers. He believes that DESE has set up a fair system. "The thing I like about the formalized complaint process is that you have people looking at it who are not tied up in the emotional aspect, because obviously the parents feel strongly about it, as they should," he says.
Rather than filing a due-process suit, Tucker complained to DESE's Office of Civil Rights in 2005, when she believed that Jake's teachers were not following his IEP as mandated by state law for special-needs children. The civil rights office determined that the district had violated the law but imposed no penalties after determining that damage to his education had been minimal.
Tucker's Autism Support Group now includes approximately 40 members who meet once a month to discuss their children's progress and the effectiveness of the district's special-education programs.
She decided to run for the school board, she says, because the growing number of parents with autistic children needed some representation.
At the first debate, on March 28, Tucker was the only candidate who wasn't an incumbent. She arrived at the Lee's Summit Performing Arts Building unsure of what to expect, then spent the night scrambling to collect her thoughts as the candidates were questioned.
After incumbent Jack Wiley suggested that he understood her feelings about her son because his wife taught special ed and they'd baby-sat autistic children, Tucker replied in her closing, "Saying that is like me going to a male gynecologist and him trying to tell me he understands what labor pains are. Unless he's ever had them, he doesn't know."
For the next night's forum at Lee's Summit West High School, Tucker was prepared. With the members of her support group in the audience, Tucker argued with the three incumbents. During closing statements, Jon Plaas, a board member seeking his third term, labeled the district's disabled children as a special-interest group.
"I have a great deal of empathy for Ms. Tucker and her situation," Plaas said, according to the Lee's Summit Journal. "If we set aside a board seat for this special-interest group with 300 students, then we have another six special-interest groups (that want a board seat), pretty soon we have seven seats set aside and 2,100 kids covered. What about the other 15,000 students? And, by the way, what about the other stakeholders — the parents, taxpayers, teachers, administrators?"
In her closing, Tucker shot back: "I don't want you to give me a board seat, Mr. Plaas. I just want the people to vote me into it."
Tucker almost unseated Plaas, coming within 386 votes of her closest competitor's 5,065. (All of the board members ran against one another for the top three positions.)
Martin, the district's autism education specialist, says the close election results aren't cause to believe that other parents are as upset as Tucker.
"I can't say why anyone voted the way they did," Martin says. "Some may have voted for her because of her issue, but some might've done it because she was the last name on the ballot, and some may have done it because she's a female."
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Sam Lindsey's last day of school in the Lee's Summit district was April 17, 2007. He hadn't spoken in almost nine months, and in the last few weeks his behavior was increasingly feral: throwing things across the room, spitting, spinning in circles so furiously that he would have hurt himself if Joyce Lindsey hadn't stopped him. She couldn't take him to school without him trying to run away.
By then, Lindsey had filed an Office of Civil Rights complaint with DESE. In March, she alleged that Sam's teachers had harmed him because they had refused to update his educational program despite his drastic personality changes.
"I would've taken him out earlier, but I didn't know how getting out of the system might affect the complaint process," she explains.
On Wednesday, April 18, Lindsey expected to take Sam to school that afternoon. First they had a clinic visit with a speech pathologist whom Lindsey had hired to try to help Sam talk again. The therapist (who asked not to be named in this story) had already expressed concern about Sam's lack of receptiveness and his inability to respond. Sometimes, after half an hour of coaxing, she could get him to murmur a B sound, but the process was exhausting all of them, and there was little evidence of progress.
At the clinic, Lindsey watched Sam's session through a two-way mirror. He went through a series of sensory warm-ups, jumping on a trampoline and going down a small slide. But when the warm-ups were over, he curled up on the trampoline and refused to move.
Eventually the therapist got him to sit on the floor. She tried to do some identification exercises designed to get him to recognize objects by name. She spread a few toys and cups across the floor. "Can you get me the ball?" she asked. After a moment, Sam picked up the ball. Then he threw it across the room.
The therapist looked up at Lindsey behind the mirror with an obviously tired expression. Lindsey understood her to be wondering, What the hell am I supposed to do here?
After the session, Lindsey and the therapist concluded that as long as he continued to regress, there was no use continuing his speech therapy.
Then Lindsey called the school to say Sam wouldn't be coming in that day.
She took him to a playground, then home to watch Finding Nemo. Ten days later, after what she describes as an unsatisfactory meeting with Sam's teachers, she pulled him out of the district for good. Six weeks later, he still wasn't speaking, but he wasn't crying anymore, and the tantrums had stopped.
But DESE dismissed Lindsey's complaint, ruling that the district had met its legal obligation to Sam by holding IEP meetings with Lindsey and trying to be as collaborative as possible on the boy's education.
"They argued that by meeting with me, they were meeting the letter of the law," Lindsey says. "But there's a difference between working with a parent and just letting a parent speak, then doing what you think is best anyway."
Based on the reviews available from his earliest education in the DESE First Steps (a program for children 3 and younger) and his reviews from Lee's Summit's early childhood program, Sam's skills declined in 12 of 13 areas while he was in the Lee's Summit district.
Now he's in a community outreach education program at Shawnee Mission Medical Center — and making progress. He has regained roughly half of the words and sounds he could make before he started in Lee's Summit. Lindsey filed a request for due process against the Lee's Summit district in February. She's still waiting for a response.
In the time between leaving Lee's Summit and starting at Shawnee Mission Medical Center, Sam went through an intensive course on communication in Columbia. Lindsey hopes that someday he'll be able to speak full sentences, but she worries that the time lost at Lee's Summit and the following year while looking for a new program closed too much of Sam's short window.
"You have a few years in their development, and then that's it — they've come as far as they're going to be able to," she says. By filing legal action, Lindsey says, she's not looking for money from the school district.
"All I want is for them to do for him now what they should've been doing all along."
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Your story sounds all too familiar with ours. I too have a son with Aspergers. He is 9 and we are homeschooling as the school system was well shall we say....a living nightmare-you can relate{{HUGS}}I look forward to getting to know you better:)
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